Monday, September 12, 2011

The Disability Hierarchy 5: Wheel Life Drama

By far the most popular international symbol for disability is a wheelchair user. Proper disabled people are wheelchair-users. When anyone wants to represent disabled people pictorially, anywhere from government leaflets to children's books, they will invariably opt to draw or photograph a wheelchair-user.

Of course, the position of wheelchair-users in our society is a weird one, because quite obviously, you can't hide a wheelchair. You can't pass as non-disabled and as such, you get differential treatment wherever you go. However, your mobility impairment is recognised immediately. Many, if not all, of your accommodation needs are obvious and considered automatically legitimate. So what you lose in social privilege by never being mistaken for non-disabled, you partially regain in going straight to the top of the disability hierarchy, a phenomena that Sue has described as The Leg-tatorship (which I mostly enjoy because of the implication about who runs a dictatorship).

A proper wheelchair user, in the popular mind, is a paraplegic or double above the knee amputee, who has such high upper-body strength that he can make the chair jump up a staircase if there is no ramp. Some wheelchair symbols even incorporate this active image (I have recently seen even more active symbols, as if the wheelchair is taking flight, but I can't find them today). Some of the discussion about such symbols can be unintentionally alienating to people who are dependent on batteries or other people to get around, and of course ignores the matter that most disabled people are not wheelchair-users.

The vast majority of wheelchair-users in films and on television are paraplegics or double-amputees who self propel their wheelchairs – certainly all the heroic ones are. In real life, very few of us have lost total mobility in our legs. Usually, it's just that we can't walk far enough to make it worthwhile, because of pain, fatigue, weakness, spasticity, poor co-ordination, stiffness or a combination of the above. In other words, there aren't many wheelchair-users who have straight-forward impairments which start and stop with the inability to walk (not that even paraplegia is quite so simple). Many of us don't use a wheelchair around our homes.

So there is a massive but entirely artificial division between walking and wheeling. I imagine most people who have become wheelchair-users through chronic illness will have experienced both their own and others anxieties about early wheelchair-use, as if it's a huge negative step. The narrative where someone struggles on, resisting further tokens of disability before finally succumbing to wheelchair-use (or asking for help, claiming benefits, whatever) is an appealing and popular narrative within the Tragedy Model of Disability, but it is also genuinely tragic that a helpful piece of equipment carries such enormous psychological weight.

In the same way, many of us have experienced the vast difference in social attitudes and accommodation between walking with mobility impairments and wheeling. Like I say, you become very definitely disabled, that brings a load of nonsense with it and there is less room for compromise around physical access. But as a younger ambulant woman, strangers would sometimes consider it okay to challenge my need to stop, sit down, take a taxi, use a disabled loo because they couldn't see any impairment (although principally, because they were rude people). On the subject of disabled parking, non-disabled people and even some full-time wheelchair-users often seem to have the idea that if you can walk at all, you have no mobility impairment. In reality, painful walking requires far more time, planning and a greater reliance on disabled facilities in order to get around. In the wheelchair, I'm sat down, so it doesn't really matter if I have to take the long way round.

Margo has written about how others have regarded her ability to shuffle about inside the house as a sign that her condition is relatively mild compared to full-time wheelchair-users, despite the many severe functional impairments she has. I fully concur. My physical impairments get in the way of many things, but the pain that causes them is infinitely more difficult to manage. And much worse still is the cognitive impairment which stops me working, being able to drive, being able to socialise, being able to look after myself and being able to do very much outside the house without help. I would ask my fairy godmother for improvements in many different aspects of my health before we got onto making me walk better and further.

However, there is an increasing attitude that this is the twenty-first century, the world is now fully accessible (did you notice? I must have slept through it!) and being a wheelchair-user is not a big deal. The new Personal Independence Payment which is going to replace Disability Living Allowance is based on this premise; if you can self-propel a wheelchair, then your mobility impairment incurs no more cost than if you were fully ambulant. Lisa has written about what a disaster that will be, and Sassy Activist has written about the massive unseen cost of being a wheelchair user.

And naturally, there is a hierarchy of wheels! I'd like to have written a hierarchy of all mobility aids, but I'm not confident of the difference in social attitudes towards crutches, walking frames and so on. I know there are differences – for example, I know people who use crutches all the time are often asked what they have done to themselves, because crutches are seen as temporary. I know that walking frames are associated with old age and all the stigma that entails. I perceive that it is far more acceptable, even now, for men to have walking sticks or canes, presumably because of their history as a masculine fashion accessory.

And so to

The Hierarchy of Wheels

Assistant wheelchair – bottom rung of the wheelie ladder. When I am pushed in a manual wheelchair, far fewer people interact with me. It is as if your (assumed or actual) inability to self-propel suggests an inability to communicate. Sometimes, I do struggle to communicate, but that doesn't mean I'm not present. Of course, with an assistant wheelchair, people are provided with a convenient ambulant person who is always with you and who they can address over your head.

So there are times when being in an assistant wheelchair is much like being a ghost. Many people don't merely ignore you, but behave as if they can't see you, as if they don't want to see you. A smaller group of people simply stare, but don't interact with you – never smile back if you smile at them. I really don't know what I'd be without those sensitive perceptive people who feel that ghosts are people too.

Assistant-wheelchairs are extremely rare in film and on television, except to depict total incapacity – e.g. McMurphy arrives back on the ward in One Flew Over The Cuckoo's Nest in an assistant wheelchair having been lobotomised. Mr Pots from It's a Wonderful Life has an assistant wheelchair, but I think that's merely historic – if that film was remade today (God forbid!) he would definitely be a powerchair-user.

Scooter – For some reason, when I think of all the stories of disability street harassment from friends and acquaintances, scooter-users are over-represented. I've not used scooters a lot, but as a young not-fat woman, I think I'm in an advantageous position when I do. Mind you, in 2005, Ms Wheelchair of America was stripped of her crown because she used a scooter more often than a wheelchair. This lead to a lot of odd on-line discussion about wheelchairs, scooters, the ability to walk a few steps and one's qualification as disabled.

Scooters do seem to have a emasculating image which I don't understand. For one thing, it's often the only way you can off-road if you have bad legs. Little boys are often fascinated by mobility scooters – especially if they are being ridden by a grown up man. And perhaps more than any other disability tech, scooters have the potential for superhero conversions [links to The Sun]. Yet as a young man, Stephen has experienced so much street harassment as a scooter-user that it's become a routine experience.

Meanwhile, very overweight scooter-users are massively stigmatised with the idea that fatness vaccinates against all non-weight-related conditions (as mentioned here) and fat people must be using scooters out of laziness - something Renee has written about. (Personally, I don't know why people would be upset even if people did use scooters out of laziness – who exactly loses out by that?)

Older scooter-users on the other hand are considered a menace because old people are hilariously doddery and did you hear about the old biddy who ran her scooter into the canal? Ha ha ha! Older disabled people are going to get their own post in this series but suffice to say that older people themselves and anything associated with them – conditions, equipment and so on – sits very low on the disability hierarchy.

Scooter-users are immensely rare in films and on television. In fact, apart from the occasional mad-granny-on-a-scooter used for comic purposes, I can't think of a single example. Anyone?

Electric wheelchair / powerchair – things get a lot better. My most positive experiences of going out and belonging in the wider world on wheels have been with my electric wheelchair. A much higher proportion of strangers are able to look you in the eye and address you directly. Stephen Hawkins is a powerchair user and is perhaps the most famous disabled person on Earth.

Although powerchairs are relatively rare in film and fiction, wheelchair-using villains almost always use electric wheelchairs; Davros, John Lumic (who invents the Cybermen in a parallel universe), Rygel from Fascape, The Man with The Plan from Things to do in Denver when you're dead, Dr Loveless from The Wild Wild West eventually even Blofeld. It seems there's something sinister about moving about by the use of a joystick – like I say, if Mr Pots was around now, that miserly dude would be packing batteries. If it wasn't for Professor X and Odell Watkins in The Wire none of us would ever be trusted. Oh yeah, and Dominique Pinon's character in Alien 4, but I think he may be as ashamed of that role as I am to have seen the movie*.

Self-propelled wheelchair – top of the props! People who self-propel their wheelchairs can be entirely fit and healthy and sometimes very muscular and sporty. Some self-propelling wheelchair-users are so physically fit, sporty, successful and wealthy, they can happily call for the abolition of the word disability, because you know, it's such a negative word and they don't want to be thrown in with the rest of us who aren't nearly so brilliant (sorry, it's still fresh).

But as I've said, there is the increasing perception that anything is possible, workplaces, homes, transport and so on are now completely accessible, right? And whilst other disabled people may be looked at and presumed to be non-disabled, self-propelling wheelchair-users are increasingly looked at and presumed to have no more impairments than the one that can be seen. Not to be in pain, not to have difficulties caring for themselves or getting around. Our culture struggles with the idea of multiple impairments and possibly struggles even more when one impairment is very obvious and others are not.

However, self-propelling wheelchair-users have no shortage of positive famous role-models, in politics, sports and entertainment as well as no end of positive characters (if rarely central protagonists) in films and television drama; Ironside, Ron Kovic in Born on the Fourth of July, Dan Taylor in Forest Gump, Kenny in The Book Group, Adam Best in EastEnders, Josh Taylor in Neighbours, Joe Swanson in Family Guy and the highly controversial Artie in Glee.

And oh look, they're all men! And would be all white, except I've just remembered Stevie from Malcolm in the Middle. And then just as I was about to give up, Stephen pointed out that character played by the lovely Gina McKee in Notting Hill was a self-propelling wheelchair-user. Oh and I've just remembered Eileen Hayward in Twin Peaks. Well, that's all right then.

------------------I hope you appreciate that when I list disabled characters from films, I'm sure there are others, probably far more obvious ones who have escaped my mind. So feel free to join in with my compulsive listing. One of these days I may create a blog post listing all disabled characters in films and television, as nobody seems to have tried to write a complete list yet.

* In fact, for all its faults, Alien 4 (or properly Alien: Resurrection) handles disability very well. The character is complete, both flawed and likeable in his own right and he just happens to use a (very cool) powerchair. The impairment is used but only as fairly minor plot points (e.g. he can't feel the Alien's acid blood when it falls on his leg, he uses the chair to smuggle contraband etc.) and never for the soaring pathos you can usually expect when you encounter a wheelchair-user in an action movie.

7 comments:

It was interesting reading this, because I have a similar hierarchy in my head about what I'd rather use, but it's based on factors that are very (I won't say entirely) different. Control over my body and my movement is, I feel, the primary axis on which my mobility aid hierarchy turns. I have used both manual chairs and "transport"chairs (the kind with itty bitty wheels that can't be self propelled) while being pushed by another person. I am very sensitive about this. My partner is allowed to push me when I get tired, but not otherwise. No one else is allowed, not even my parents. If someone pushes me where I don't want to go, I can get very upset. I have used mobility scooters before in shops, but because I waited too long to get my driver's license, and then I got sick, I've never driven a car and am terrified of knocking something or someone over. It makes me feel out of control. I have not had the opportunity to try out a powerchair because of insurance and financial concerns. This might be better for me, but so far a self-propelled manual chair gives me the most control over my movement, despite the weakness of my upper body, and despite my pain. I love manual chairs. They have helped me to be so much more active and present in the world and my home community.

Oh, I share your feelings - if I could self-propel, I'd much prefer that, and when I can use my powerchair, that's a thousand times better than being pushed. Wheelchair Dancer has written about being pushed, and I imagine that post and the comments reflect your experience.

I also share your pleasure at the freedom wheeling can bring. A post I meant to link to somewhere in my post is this wonderful pictorial ode to wheelchairs at Stickman Communications.

But there's a big difference between personal preferences - even a majority preference (I could be wrong but I can't imagine anyone would prefer to be pushed) - and the different way people are treated. The only connection between the two things is that I think it's fairly natural to want to be as acceptable as possible. For example, I particularly loath being pushed by my parents - it makes me feel, and I fear it makes me look, like an overgrown child.

@Ruth - thanks for these, I'd not seen such good attempts before! Only trouble is that they are dominated by films about disability, as opposed to films with incidental disabled characters. For example, no Bond films - and most Bond villains have some impairment or disfigurement or other.

I think whilst stuff like the Bond films make no attempt to tackle disability issues (on the contrary!), these are popular depictions of disability that everyone gets to see. And in many ways, I think they are as important as films where disability is a major theme.

As my little nephew grows up, he is going to meet Captain Hook, Blofeld, disabled villains from Dr Who or comic books film franchises long before he watches anything where disabled characters are complete human beings. So I think when we consider disability in film, Batman is as important as A Beautiful Mind. And of course both are massively problematic... ;-)

Sorry - I'm not complaining at you at all - these are very useful resources! Thank you for the links. Only, I am still tempted to try for a more complete version at some point. :-)

Those like me, who have avoided more by luck than anything else being Wheel Chair Bound. Despite Expert predictions find themselves labelled as having strong "Illness Beliefs" and in need of counseling which nobody seems able to provide.

In my case also, Existing Physical impairments have been said to be of no concern to those trying to physically rehabilitate me after Brain Injury.

"Walking Away" from such leaves one finding that the battle over you continues among Bureaucrats even without your involvement.

Hello, I clicked through to your site from one of your comments at Womanist Musings.

I once had a moment of clarity on my own ableist thinking (I'm a TAB woman) about 20 years ago when I was watching a TV documentary about a man's disability. Except that he was a civilian, I think he hit the "top" of all your hierarchy criteria. Anyway, the thing that made me see that half the "problem" for people with disabilities is TAB people was my immediate and dramatic change in perception of the man when he used different types of mobility aids. The most dramatic mental switch for me was when I saw him in a custom-made battery-powered "wheel chair" that could unfold itself to support and move him in a standing position. I could observe myself stop infantilising him, just because his head was higher, or rather I could observe that I had been infantilising him while he was seated.

I've recently been seeking assessment for a formal Asperger's syndrome diagnosis, and had a dream last night or the night before of having a phone call from someone in that authority, and having to persuade him that the wheelchair they were talking of kitting me out with was not in fact needed.